Hi all,
Just a quick post to say that I'm really struggling to eat at the moment - trying to pinpoint the culprit, but I think gluten is the cause of my discomfort (bloating, constipation, IBS, reflux). I just wondered if anyone else out there with endo has also been diagnosed as celiac?
I keep delaying my blood test as I have this fear that I'll not get any answers from it.
TIA
Hi Rachel239
From the information I have read and experienced first hand there seems to be a relation to intolerance of foods, particularly gluten, and endo. I have felt ill off and on throughout my life and in 2007 after showing celiac symptoms decided to cut out gluten entirely from my diet which removed all my symptoms. I have endo but was only diagnosed 2016 when I turned 34 however believe I have had it since adolescences (I started my period at 9 and had awful periods/pain). Anyway I believe because I ate a very healthy diet which controlled inflammation my symptoms of endo were removed. The doctors informed me I wouldn’t be able to be tested for celiac unless I ate gluten again for a minimum of 12 weeks which felt would be hell for me despite loving Bread.
I did in the future eat gluten for 12 weeks and have the test but the results came back as negative.
Anything is possible, someone may have celiac disease and endometriosis however someone with endometriosis may have a gluten intolerance so will not show up on a test. Everyone is different so dietary intolerance will be personal - get to know your body and make food choices based on symptoms experienced.
I have literally just downloaded a book recommended by someone else, it’s free on Amazon atm so might be worth a read - Outsmart Endometriosis by Julia Drummond might we worth a read.
Some do have both and I have read that there can be a link. Before I was diagnosed with endo I had tests for suspected coeliac disease. I had all the symptoms (offensive, frequent diarrhea sorry if TMI) and weight loss. I excluded it from my diet and started to improve. I then had to go back on it for a few months before having a colonoscopy (my bloods had showed nothing). I struggled to manage anything like the amount I should have been consuming prior to the scope test as the symptoms made life unbearable. I was told by the gastro doctor that you can be gluten sensitive and not have coeliacs disease so he told me whatever my results to stop eating it. The only time I have had small quantities of it (under supervision of a dietitian) I get a return of symptoms. So I completely exclude it now.
If you are currently eating a gluten containing diet now is the time to get the blood test done! It won't work if you've cut it out. If it shows coeliacs disease then you need further tests but you'll know. If it doesn't you may well still be gluten sensitive like me so then eliminate gluten for 6 weeks and see if you feel better. You can reintroduce after that to test your reaction if you wish. Many women with endo cannot tolerate gluten but it is important to know if you are actually coeliac because you would have some damaged to your bowel if you are and you would need monitoring to check if you are healing up ok.
Hi Rachel
I am 44 and had struggled with really heavy periods and generally feeling ‘ugh’ and tired frequently for much of my adult life. After feeling like I caught every cold going and was too often under the weather, I had some general bloods taken (when I was 37) and I requested coeliac be tested as my Mum had been diagnosed with it at around the same age. Although I did not have the typical diarrhoea symptom (always the exact opposite!) the test was positive and I had an endoscopy to confirm. After feeling an improvement, particularly in the way my mental health felt, I then began to experience some awful abdominal pains and even heavier bleeding than usual around a year after the coeliac diagnosis. After scans which showed growing ovarian cysts over a year, I had a lap (during which nothing ended up being done as they discovered endo and ovaries stuck to uterus) and was diagnosed with endo.
Yep... 15 years ago diagnosed with endo and 5 years ago as coeliac. If you are convinced, get that screening test done. BUT make sure you keep eating gluten in the meantime to make sure you get an accurate result. I gather it’s fairly common to have both. How lucky are we! :S...
Have the test done, it's a simple blood test. One thing I do know, is that a large percentage of women with endo, have IBS symptoms. Treating the endo, with a good Dr doing excision, is the best way to go.
Nerve issues?
Relationship issues 
Appetite issues 
Bladder issues 
Bowel issues...
